Research Project

Project Title:

Italian registry of Alport Syndrome (Registro Italiano Sindrome di Alport) Reg-I-AS

Project Type:

Registry
Adjunct biobank: DNA, Urine

Disease group(s):

Hereditary glomerulopathies

Project Summary:

The aim of the study is to obtain epidemiological information (number of cases and distribution on the national territory) useful for defining the dimensions of the Alport syndrome. It is a tool to establish the prevalence / incidence of the disease, establish phenotype-genotype correlations, estimate the diagnostic delay, the "health migration" of patients, support clinical research and promote the comparison between health professionals for the definition of diagnostic criteria.

Lead principal investigator(s):

Alessandra Renieri, Siena

Co-investigator(s):

Marco Pennesi, Trieste
Licia Peruzzi, Torino
,
,
Laura Massella, Rome
Marisa Giani, Milano
Francesco Scolari, Brescia
Giovanni Conti, Messina

Project Period:

07/2016   -   06/2022

Sponsors:

Non-profit foundation

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